Wednesday, September 06, 2006

A Breath of Fresh Air (Journal#34)

After a month and a half of waiting, we finally were able to get in and see a behavioral therapist today. One that our insurance covers with a copay (finally)!!! She has her office at the Autism Society of Minnesota headquarters. By the way, check out this adorable picture of Sam on the advocacy page of our state's website, click here! Okay, enough bragging, although I am sad, because he is already well over a year older since that picture was taken. They grow up way too fast!!

Brent actually flew in early this m0rning (he was out of state for work, we do live together:) to make the meeting. I was so glad he could be there. Given his crazy travel and work schedule, he has not missed a meeting. We asked a lot of questions about our concerns with his need for whole body stim, safety issues, communication issues, his agressive behavior when having a melt down that is leading to more dangerous situations for him and others, just lots of things.

She gave us sooooooooooo many things to work on, and Brent and I are excited to begin. It is going to involve a lot of work, redoing some of our picture schedules, creating more "therapy spots" in the home, lots of time, but mostly lots of love, which we have.

One of the things she shared with us, which I will share with my autism friends is a concept that was new to us when using Social Stories. Instead of verbalizing the written story(and doing pictures), she suggested video taping Sam doing the things we are needing to work on. For example, taping him walking safely across the street, or taping him coming to talk to us before "escaping", I mean him wanting to go out to play :). She told us she has been involved with recent studies looking more at the thing that frustrates us most about Sam. And that is he can tell us exactly what he needs to do in situations after only being told once, but he can't apply it for himself. This has been most frustrating for us, but she explained some of the research showing the brain connections with autistic children,and that they can understand and even apply to other people these procedures, but the part of the brain that allows them to see themselves doing the task doesn't always connect, even with a picture of themselves. For them to physically see themselves moving through the actions on video is finding some success with other familes who have tried it. So, we are excited about taking our social stories to a new level of "animation"!!!

She also suggested we follow through with applying for county assistance for developmental disabilities, as she thought we could use more help in the home, and could get him more services. I have put off filling out the the 200 page application (it just seems that long) because we couldn't afford the TEFRA copay, and because the "waiver" waiting list has been closed for two years with no opening date in sight. So, I am now motivated to do that again, and at least get a case worker assigned to Sam as she suggested. I am sharpening pencils as we speak (oh wait, it says use blue ink only).

The last thing she encouraged, was for us to finally look at RDI. I have been poo pooing it this past year. Trying to just read up on it, but again, thought it looked expensive, considering our stupid insurance. But, I know some of you out there have had success with it, and others also by just going to conferences and self educating, instead of paying providers and consultants. I would love feedback on how RDI has helped any of you, and suggestions on going full boar, or just taking peices that work, or whatever suggestions you have. THANKS!!!

It is nice to talk with someone, and the new behavioral therapist gave us that little motivation to get back at it, and she also gave us a breath of fresh air.

4 comments:

kyra said...

yay! i'm SO glad you found someone you all like! who *gets* you and your child and has suggestions that feel right and inspiring!

i'm also glad she suggested RDI! that's very encouraging. i'd be more than happy to pass on some RDI tips. i can email you if you want or just say the basics here.

using experience sharing language rather than prompts or imperatives or questions that are like quizzing. shoot for using language that is about sharing your thoughts, views, feelings, etc. about 80% of the time and using imperatives 20% of the time. when you say something, wait about 45 seconds before you say anything else. if sam doesn't respond, you might try saying something else and wait again. for example, if you're on a walk, instead of saying, oh, look at that tree! see how red the leaves are! try saying something like, wow. i love the red leaves in that tree! and then wait a while before saying anything else. i have many more examples if that isnt' clear, but the underlying goal is to slow down, and have language be used primarily as a way of sharing with another, not asking for answers, fill in the blank, directing behavior, etc., there's a way to sort of "cheat" when it comes to things like putting on a coat,etc. for going outside that is about encouraging our children to develolp their own 'inner supervisory system' rather than be prompt dependent. you can put your coat on in an obvious way and say something like,'i'm ready to go outside! i have my coat on!" and then wait that magic 45 seconds to see what sam does. or 'uh oh, i almost went outside without my coat! or, oh! i see your coat on the hook!

the second relates to the first and it has to do with slowing down in general. talk less, talk with more pauses and hesitations, pare down the day so there is literally less going on, less busyness. add silly words or behavior, like saying, i need a fork and then grab a plate and look at it, confused. maybe look up at sam and make a silly confused face and say, ooops! silly mommy!or put your shoe on your head and say, huh, i wonder where my shoe is? this is not to entertain, it's just moments of sillyness spliced into regular life to create productive uncertainty, a reason to look, to pay attention because who knows what silly mommy will do or say. and it creates moments to share together, share the experience of whatever just happened in that moment, together.

use non verbal communication when you can, facial expressions, gestures, even short sounds, an oh! or ah! or ooops, wow, aw, hmmm, ahhhhhh, can all go a long way. it's not that other words can't be used too but i used a lot of these and still do with fluffy. he'll usually look right up at me to see what is making me say that or utter that. it works a million times better than asking him to look or calling his name.

highlight the anticipatory moment, the moment before something new comes out of the bag, the moment before you turn the page to find out what happened, the moment before you put the next block on, the moment before you come in for a kiss or tickle or raspberry. in fact, lap songs work very well. peek a boo, hide and seek, keeping it very simple and obvious at first. we played a game called, 'here comes a...' fluffy would be either on my lap facing me or on the floor on his back. i would say, here comes a..... and draw out the moment and then say 'kiss!' or 'butterfly kiss' or eskimo kiss! or puppet show! or silly face! the lap song i liked was, trot trot to boston. fluffy would be on my lap facing me. i would say, 'trot trot to boston, trot trot to lynn, watch out fluffy, you dont' fall in!" and as i said the last line, i drew out the words, slowing down, hesitating, and my expression would spotlight when i was about to about to about to...... yes! open my legs and drop him in! he would only go in a little bit so it wouldn't scare him or make him feel unsafe or unsteady but only silly and fun. i loved watching how INTENSELY he would watch my face and i could actually SEE him learning how to use my expression to know when i was getting close to dropping him in!

the first stage corresponds to such an early stage in NT infancy, a time when adults very naturally use exxagerated facial expressoins, less language, lots of exagerated prosidy, draw out a look and gaze for a looooooong period of time, lots of ooohs and ahhhs and gasping. not that we'd do that exactly with our 5 year olds but remembering how we are with infants helps set the tone.

gee. i hope some of that helps!

Sam I Am said...

Kyra,
Thanks, I was hoping to hear from you, the expert I respect. I forget about using language like that. I naturally speak fast and know I need to consciously slow down and minimalize the words I use. Will share your comments with my husband as well, thanks so much!!!! Would love to hear more. E-mail is good too. I can drop you a line from your blog. Thanks again!!!

Kristina Chew said...

Lovely photo! Charlie has been taught using video modeling, which is somewhat similar---more the idea of just having him learn to do a simple activity from watching a video. I could see how having a video of himself would help---we have used photos with Charlie himself in his picture schedule for the same reason.]

Laura, I have a good friend in the Twin Cities with an autistic son Charlie's age----did lots of Lovaas, biomed, and more, and RDI too. If you'd like to get in touch with her, let me know.

Lora said...

Griffin uses social stories too but they are done in book form. His teacher puts together books when they are going to go on a field trip for example or some kind of outing and it works wonderfully. That's a gorgeous picture of Sam and how neat that he was chosen for the website.

Thanks to Kyra for all the RDI info because I am interested in it as well.